So I have had this balance and vertigo and dizziness issues since November 2017. And I have done the ENT thing and I have seen a vestibular clinic and I did an MRI. And the MRI… well it didn’t look so pretty, man. I have migraine lesions due to chronic migraine with aura. But I had New lesions in areas known for demyelination. So off to this neurologist, I go to say yay or nay on Multiple Sclerosis (MS). Which runs in my family.
He had the top neurologist look at my MRI and that neurologist concluded it was MS. I present with MS symptoms… these balance issues and cognitive issues and so forth. But there is a lot of overlap between fibromyalgia and MS so hard to say which is causing which. He did a physical exam and I did very well. He believes I have early remitting MS but wants to do a contrast MRI before treatment to see if any lesions are lighting up (flaring) and whether I have any on my spine. And then we will be 1000% positive and we can then look at specific treatments to help with halting the progression and helping with symptoms. He also wants me to see their MS cognitive expert to help with my cognitive issues.
What I think
So I think it is very good that they caught it this soon that I did so well on the physical and that they can slow the progression at this stage. That is very good news. I asked about my current symptoms and he said they don’t go away unfortunately but they shouldn’t Get Worse and they can do medications to treat symptoms as they crop up as well. So positive in the sense that there are a lot of very good MS medications out there. And usually when I am diagnosed with something it is all ‘we have nothing we can do, sucks to be you’. So this is different. Lots of treatment. Lots of support. A team of people to help me. I mean, if you’re going to have something then it is better to have something with a lot of treatment options and a crapton of research going on.
I feel out of sorts. I mean, I sort of expected it from the MRI report being so ugly. And my family history being what it is. But sort of feel emotionally chaotic about it. I do Not Want Another Shitty Diagnosis, thanks. But that is what you get whether you like it or not sometimes. It is what it is. And, yeah, I can feel sad about it. Rant and rave a bit. But I will have to face it head-on and cope with it. I feel on the cusp of tears but I don’t want to cry about this. I have dealt with health issues for a long time. I can deal with this. Hell, I can deal with anything having dealt with what I have. I don’t Want to but I certainly will. And I will rock it because my coping skills have been refined by every level of hell we go through while we struggle to cope. But it is a bump in the road of coping. I will feel a slump. It is normal. But I will adjust. Dealing with the vertigo, the constant relentless dizziness, the cognitive issues, the fatigue, the balance issues… and knowing that is just going to stick around until I get out of this flare… and then come back… does not please me. My functionality sucks and I do not like that at all. I thought, maybe, with proper medication it would improve and to know it will not is a bit of a hit.
My friend said to me when she and my friends took me out for a nice distraction ‘I wasn’t sure if you would be sad or relieved’. And I said ‘both’. Because it sucks, a lot, but yes, I have answers and treatment potential and I know the cause of all these symptoms. So both. I do feel very out of sorts. Mopey. Real mopey. But I do understand that at least there is treatment and support. So I know I will kick myself in the butt soon and just deal with it. My friends did take me out to karaoke and I did chat with them, one does have MS, and it did help… and I EVEN SANG A SONG. I sang The Logical Song by Supertramp. And apparently, I didn’t suck. I sang it with my friend because of course I am introverted and terrified of being in front of people. Anyway, it was a damn good distraction and prevented me from just moping at home all night overthinking myself into a funk. Today I feel a bit better. Still out of sorts but a bit better.
And who the hell knows? Maybe he will do that contrast MRI and say, hey, not MS after all… your brain is just messed up. He said people with MS in their family can sometimes mimic MS in the brain… which is weird. One never knows. Because MS is hard to diagnose as well. And migraine lesions complicate things a lot. But yeah, their head honcho says it is and yeah he says it is he just wants to look at what is going on specifically before choosing medications. So I have to go on those facts. And deal with those facts as they are at this time. I told him I wanted to be mentally prepared and needed to know and he said it was but that he wanted to do the contrast before treatment. So yeah it is. And that is that.
Multiple Sclerosis- the deal
Is a frustrating disease for sure since no two people present the same way. I can’t really say ‘what can I expect?’ because who even knows?
Canada has one of the highest rates of multiple sclerosis (MS) in the world, with an estimated 1 in every 385 Canadians living with the disease. While it is most often diagnosed in young adults aged 20 to 49, younger children and older adults are also diagnosed with the disease. MS Society
It is speculated the fact in Canada we get it so much more often because of the lack of vitamin D we get- being where we are and all.
MS is considered an autoimmune disease of the central nervous system.
The disease attacks myelin, the protective covering of the nerves, causing inflammation and often damaging the myelin. Myelin is necessary for the transmission of nerve impulses through nerve fibres. If damage to myelin is slight, nerve impulses travel with minor interruptions; however, if damage is substantial and if scar tissue replaces the myelin, nerve impulses may be completely disrupted, and the nerve fibres themselves can be damaged. MS Society
There are three types of MS
- Relapse remitting MS (RRMS)- Basically periods of relapses and remissions. (This would be me in this category)
- Progressive MS (PMS)- A certain amount of people with RRMS will get into PMS where the relapsing/ remissions will end up being less remission and more progression of symptoms.
- Progressive Relapsing MS – Experience progressively worsening symptoms from the beginning. But also with relapses.
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